Thursday, April 30, 2009

“Are you an epidemiologist?” the man in the seat next to me asked, gesturing towards the 200-page deep stack of journal articles I’d been attempting to annotate for most of our flight.

“No, but it would sure make this easier if I were. I’m a writer,” I told him. I noticed he was reading a book about epidemics, and for the last twenty minutes of the flight, we had a great discussion about disease, drugs, and the social influences on the two.

Turns out, he works for a tiny pharmaceutical company where the handful of employees work mainly from home. We left diseases and drugs aside to discuss working from home—or, more accurately, the misconceptions about it and the hidden benefits of it. I work from home part of the time, and I was traveling to speak at a symposium about young adults with chronic illness in the workforce, so this was definitely up my alley.

I’ve been told I’ve been a bit feisty lately, and this subject definitely gets me animated. Despite how many people telecommute or are self-employed, I still feel like sometimes there’s this attitude that working from home is somehow easier, less demanding, or less real “work.” My fellow passenger has noticed the same vibe.

Um, no. It’s different, but not easier. This isn’t an illness-specific post; so many writers, editors, artists, designers, consultants, sales people, etc work from home or are self-employed, and they know it’s just as draining as the 9-5 grind, but in its own ways.

A few days a week I do not have to deal with commuting, and I realize how fortunate that makes me. But I’m also at my computer, chest PT completed and coffee consumed, and at work by 7:30 at the latest every day, so I put that commuting time to good use. While the isolation of working from home can be an issue, my airplane companion pointed out a real bonus of that isolation: he doesn’t waste time being distracted by office chatter, people popping in to ask him questions or procrastinate; he just gets his work done.

“I get more done working straight through from early morning to lunchtime than most people do in a whole workday,” he said.

I can relate. My office is my laptop, and while I break for lunch and then again at dinnertime to go to the gym, I come home and usually get back to work, sometimes not stopping till 11pm. This is not a complaint, and it’s partially just my personality to be like that so I have no one to blame for the lack of boundaries but myself. I’ve started trying to leave my laptop up in my office after 8pm so I’m not tempted to work, and the physical boundary of the staircase is helpful.

I don’t have to slog through snow and rain when I leave the office at night (well, I do during the semester, so I know it stinks), but the flipside to that is that I don’t ever “leave work at the office.” (Does anyone ever, really? Even if it’s just thinking about it?) Any writer or teacher can relate: weekends, evenings, and holidays equal copious essay reading and grading and client deadlines and research and e-mail requests. I’m being honest when I say the last time I didn’t do any type of work on a weekend or vacation was my honeymoon almost four years ago. Anyone in any kind of freelance position knows that when you’re not pitching, pitching, pitching now, you’re not getting paid later. It’s exhilarating and a good motivator, certainly, but only if your risk tolerance can take it. It’s not for everyone.

Again, this is by no means a complaint. I’ve made these choices in my life and am responsible for the outcomes and I love writing books, teaching college students, and freelancing. I love that I have the flexibility to go to the doctors when I need to and make up the work, and that I can avoid public places where I could catch things during bad months. I also know those of you who are not self-employed can say the same thing about working weekends and vacations—most people I know log incredibly long hours and they don’t have the choice to do it from their homes like I do.

Really, I’m just saying that while there are many, many positives to working from home, like setting our own schedules or wearing comfortable clothes, that doesn’t mean it’s some kind of cakewalk where we’re merely lounging in pajamas and watching television, or that our workday hours aren’t as valuable (or as stressful) as other people’s.

Can you tell that I’ve heard comments like that and that I get lots and lots of interruptions during the day because I’m “not at work?” Does anyone else have this problem? I think part of the reason I struggle with work-life balance and boundaries on my own is because I have to work so hard to combat the assumption I do not have a job because I am not in an office environment. Seriously, it’s been a few years of doing the teaching and writing thing, and I have someone who still asks me if I have a job…well, my college students don’t teach themselves and books and articles don’t write themselves, and so yes, I’d say I have a job. And I have two offices: one on campus, one in my house. Neither is more “real” than the other.

(And as an aside, the days where self-employed people who are also chronically ill actually are in their pajamas? No cakewalk either, despite how good I've gotten at typing while hooked up to my nebulizer.)

I’ve done both, and there are definitely things I miss about the traditional workplace: the interaction with co-workers, the stable paycheck, the benefits, the ability to take a real sick day. I know, I know, there are also many downsides to 9-5: cranky bosses, gossipy co-workers, office politics, long commutes, unwanted travel, unfulfilling projects, etc. I guess that’s my whole point: neither option is without its benefits as well as drawbacks. Let's make sure we respect the work that is done on both sides.

My mother always said she could tell I was feeling better when I got feisty (really, a tactful word for ornery when she used it) so I guess this is a good sign.

Oh, and the presentations about employment were a blast. Once I’m up there I have a lot of fun. The icing on the cake? Having dinner with the equally fabulous Paula Kamen and Jenni Prokopy, where we ate delicious GF food and talked about one of my favorites subjects: narrative medicine.…and of the work that is writing, of course.

Monday, April 20, 2009

Just a few weeks ago, I wrote a post where I confessed that the smaller daily challenges of being employed with chronic illness were more challenging than normal this year. In Life Disrupted, I devoted several chapters to the larger, macro issues that are part of any discussion of work and chronic illness: disclosure, flexibility, health insurance, compromises, optimal career paths, etc. I also interviewed the incredibly wise Rosalind Joffe about her thoughts for younger employees who have CI.

What the past few months have shown me is that even after the supposed “hard part,” the discussions we have and decisions we make to try and balance our ambitions with our health, still there is a tenuous push and pull between the ideal and reality. It is an evolving process, and while I have worked out a fairly successful balance right now, I know my career will continue to change as my professional and health needs demand. That is what makes it both exciting and a bit scary.

I can honestly say that when I graduated from college a few years ago (okay, seven years ago, I fully admit I am getting old!) I would never have predicted I’d be doing what I am doing now, but I definitely knew I had some tough choices to make. At the time, I was still working through accurate diagnoses for my immune and lung problems and spent anywhere from 4-10 weeks a year in the hospital. I had to be realistic about what I could expect from my body, but I was also unwilling to abandon the career path I was most passionate about. I just had to figure out a more creative way to get the writing and publishing experience I needed.

Anyway, I’m thinking a lot about those early career days right now as I prepare to speak at DePaul University next week. My topic? You guessed it: career considerations for young adults leaving college. There are so many threads to this discussion, and many of these points were raised by patients I interviewed for my book:

Our careers are often a huge part of our identity, especially when we are in our twenties. Think about a typical night out—how often do people ask you what you do? What are you if you are young and not working?

Many companies and institutions are not equipped to deal with (and do not understand) the fluctuating nature of chronic illness.

Young people are often the most likely to be uninsured or underinsured, so many young people with CI must choose between benefits and deteriorating health.

We often have to make choices very early on in our careers—when our healthy peers are building a name for themselves—that put us at a disadvantage in terms of trajectory.

Of course these are just a few different points relevant to young people entering the workforce. As I gather my thoughts, I’d love to hear from any of you out there who are in the midst of these decisions, or remember what it was like to face the working world as a young adult with chronic illness. What wisdom, advice, or hindsight can you offer this next generation of employees with CI?

Tuesday, April 14, 2009

(The third in an occasional series about pregnancy and chronic illness.)

A lot of the discussion in the first two installments of this series on pregnancy and chronic illness deals with what happens once children enter our lives: How do we be the parents we want to be with bodies that do not cooperate? In the ever-evolving dialogue of Can vs Should, it is an essential topic, one we need to keep picking back up.

But today I am thinking about the tricky terrain that comes before a baby, the decisions and risk analyses and variables we must weigh when figuring out how it is we will become parents.

For some women, infertility or infertility as a result of other existing illness is the issue. For others, being able to conceive children may not be a problem but due to high-risk medical situations, carrying them is. For others, it is a combination of both.

Regardless of the reasons why things don’t happen quickly, there is still the waiting game, the period of time between when you first realize things will not be easy or quick and when you actually have a child, whether through adoption, IVF, gestational carriers, etc.

Now, I do not claim to be a veteran in these matters and like many aspects of daily life, there are some conversations that will remain offline. Already there are many, many writers and bloggers who speak compellingly about infertility, adoption, and other options. But what I do know is that just like there are so many universals to living with chronic illness, there are many universals to this experience no matter where women are in this wait or why it is they are waiting, namely:

Every decision is deeply personal and should be respected, not judged. In the end, it is your family and your child’s future that matters, not what other people say or think (if only it were that easy!) And of course, the same applies to decisions to not have children after all--only you can truly know what is the best choice.

Each person’s situation is unique and cannot be applied to other couples with other sets of variables (for better or worse). Even women with the same diagnoses can have very different outcomes and different priorities going into things, so do your research and talk to everyone you can, but remember that what works for some people may not be the best fit for you. And that's okay.

I also think that sometimes the hardest part of the waiting game is interacting with other people who might not know the whole situation or might not know what to do or say. It’s a shifting landscape for everyone involved:

If we want to talk about it, we will. If we don’t bring it up or deflect the conversation, take that cue from us.

Don’t think because we don’t want to talk about this particular aspect of life that we don’t want to talk, or get phone calls, or be the same people we were.

There is a difference between listening to us and advising us. When we want to fill you in but are not yet ready or interested in feedback, respect that. If we’ve brought you into these kinds of discussions it is because we value and respect your thoughts, but know there is a time and a place for your take on the situation. Sometimes we need to figure out how we feel about things before we can productively process what others think or feel. (I'm sounding a bit demanding here, aren't I? Rest assured these are the same expectations I have for myself and my own personal conversations about this.)

What you may see as a positive may represent a loss to us, or vice versa. What may seem difficult or not ideal to you might just be wonderful news to us. Everyone involved has a right to his/her emotions, but it’s important to remember (or even expect) that there is no guarantee we will respond in the same way.

Please don’t think that people in this waiting period don’t want to hear about other children (or pregnancies), or spend time with other children. Our lives are undeniably richer because of the children already in them, and nothing going on in our lives could take away from that. I can’t speak for anyone but myself but the way I see it, there is no defined quota of babies or good news out there so your good news is just that—good news. It has nothing to do with my situation or my potential to have a family. Why would I begrudge someone else for having the very thing I know is so worth having? So no weirdness or walking around on eggshells, please!

Like I said, I’m certainly not an expert or veteran in all of this, and I know many of you have seen and experienced much more. If you have other considerations, suggestions, or general words of wisdom for everyone involved in this, please leave a comment.

(Editor's update: I forgot to mention that the best thing you can ask for are these words: "We're here for you and support you in whatever decision you make." Fortunately, this is is something I've heard often.)

* * *A totally unrelated PS--Notice the new look at A Chronic Dose? Many thanks to Pink Dezine!

Tuesday, April 07, 2009

If you’ve read recent headlines, scanned online sites, listened to President Obama speak at recent news conferences, or followed the flurry of Twitter updates and Facebook status messages, then you know that health care reform is a topic reaching across all types of media.

And with good reason, given the huge economic toll rising health care costs places on us, not to mention the quality of life issues involved for people without access to care or access to appropriate care.

Obviously, health care reform is not a new topic on this blog. A few months ago I wrote about the consensus-building Summit talks sponsored by The America's Agenda Healthcare Education Fund. Today, April 7th, is the third Health Care Summit Conversation, hosted by Tommy G. Thompson, former Wisconsin governor, U.S. Secretary of Health and Human Services and Republican presidential candidate, together with the University of Wisconsin School of Law. Click here for streaming video of the event.

The point of these talks is to bring high-profile individuals from all different stakeholders involved in reform together. In a sense, the fact that individuals from across the health care spectrum (politicians, policy experts, health care providers, labor leaders, health insurance and pharmaceutical companies, etc) are engaging in these kinds of talks proves there is consensus: everyone agrees something must change, and that now is the time to do it. These conversations focus on how we can actually make that happen.

I tend to focus on the patient aspect of health care reform since it is what I live with every day, so I was interested in the opportunity to speak with Summit panelist David Y. Norton, Company Group Chairman, Worldwide Commercial and Operations of Johnson & Johnson this morning.

Given that chronic disease accounts for 75 percent of all health care costs and this is a chronic illness blog, you can probably figure out what topics I centered our conversation on. Here are some highlights:

On the best ways to reform how we approach patients with chronic disease—“There is no holistic view of the patient,” he says, pointing to our current fragmented nature of health care delivery. Whether it’s hospital care, medication, doctor appointments, etc, a more collaborative and holistic approach would not only reduce costs but increase health outcomes.

Related to this notion of holistic care is the medical home, with its emphasis on quality primary care. In addition, he feels that electronic medical records will help ensure information is shared “evenly and equally” with relevant parties.

He echoes the sentiments expressed by many right now that shifting our focus from acute treatment to incentives for wellness and prevention would make a big difference. “We currently reward treatment on fee-for-service basis, therefore the more tests you, you get paid more. But that’s necessarily quality care, so we need to focus on prevention and wellness.”

Co-pays are a disincentive for patients, particularly those with chronic diseases, since increased co-pays shift the burden of cost to them. People who don’t take their drugs see doctors more, end up in hospitals more, and end up accruing more health care costs later.

In terms of wellness initiatives and incentives, Johnson & Johnson already has a “very active program” for its employees. It includes a smoking cessation program, financial incentives for employees, healthier food options in the cafeteria, in-house fitness centers, etc. The annual savings in employee health costs is about $400. While there are other private companies doing similar things, Norton believes “we need to change the health care system to incentivize those patients in the private system and the public system to address prevention and wellness.”

On treatment of patients with rare/genetic/existing chronic disease (you knew I’d ask!)—Fundamentally, the goal is for affordable access to quality care for all citizens, and he believes pre-existing conditions should not exclude anyone from getting that quality care. More specifically, he points to stem cell research and other innovations as keys to eliminating or alleviating certain diseases.

(An aside: as a rare disease patient I would love to see even more innovative drugs come down the pipeline—can we agree we have enough nose sprays and acid reflux pills and look to sound policies that encourage the research and development of drugs that tackle smaller and rarer disease populations? Like much of this, it’s a collaborative effort.)

On the role pharmaceutical companies have in health care reform: Norton mentions that currently, pharmaceuticals account for 10 cents of every health care dollar spent. He sees improved patient education—better knowledge of their medications can lead to better compliance and less cost down the road—and physician education as important parts of reform.

As he mentioned earlier, drug innovation is another essential component, as are policies that help patients who need medication access affordable prescriptions.

* * *Any type of consensus involves different parties with different agendas, priorities, and perspectives. Getting them altogether is the first step; seeing results that accommodate everyone’s needs is much more difficult. Be sure to check out the Summit Conversations and hear what David Y. Norton, Tommy Thompson, and a diverse group of other panelists are saying about health care reform.

Monday, April 06, 2009

The threat of possible closure of the Boston Globe has been all over the news. As an avid daily reader as well as a freelancer who has written for the Globe, this news is deeply troubling. I first read on Running a Hospital how a number of Boston-based bloggers who care about the continued existence of the Globe have banded together in conducting a blog rally. We are simultaneously posting this paragraph to solicit your ideas of steps the Globe could take to improve its financial picture:

We view the Globe as an important community resource, and we think that lots of people in the region agree and might have creative ideas that might help in this situation. So, here's your chance. Please don't write with nasty comments and sarcasm: Use this forum for thoughtful and interesting steps you would recommend to the management that would improve readership, enhance the Globe's community presence, and make money. Who knows, someone here might come up with an idea that will work, or at least help. Thank you.

It’s spring, which means the disease walk-a-thons, bike races, charity walks, and general awareness campaigns tend to kick into high gear.

As a rare disease patient, I watch these mobilizations with a mix of curiosity, appreciation, and intrigue. That these populations are big enough to sustain such events is, of course, a double-edged sword: so many people are impacted by them that there is strength in numbers, but that those numbers are so high is the very reason for the mobilization.

I had Rare Disease Day, and that was a start for me. People I love (or the people other people in my life love) live with all sorts of conditions, so I find myself sponsoring things like MS bike rides, arthritis or heart disease walks, or diabetes or specific cancer awareness events more and more. I’ve done the charity walk for Children’s Hospital Boston for several years.

But it’s the first year I’ve been aware of the existence of Young Adult Cancer Awareness Week, and I’m interested in it for many of the same reasons I wrote about for Rare Disease Day and many of the same reasons I wrote a book about chronic illness in younger adults:

This is a population whose needs are both unique and overlooked. There are thousands of types of cancer, but the larger universal experiences of getting diagnosed with it and living with it as a young adult are significant. From access to care and early detection to issues of employment and family-planning, these challenges affect so many younger adults across the country.

I had the chance to speak in person with Kairol Rosenthal last week, and it’s largely due to her advocacy that YAWC is on my radar this week. For a more in-depth discussion of young adults with cancer and the similarities they share with young adults with chronic illness, see my review of Rosenthal’s new book, Everything Changes.